Autism and Transition to Adulthood Lorri Unumb, Esq. Vice President State Government Affairs Autism Speaks
Science Family Awareness Services Advocacy
Autism and the Law Cases, Statutes, and Materials by Lorri Shealy Unumb & Daniel R. Unumb
What is Transition?
What is Transition? • Childhood to Adulthood • School to Out-of-School • Diagnosed with Autism • Into School • Medicaid Recipient • Working Environment • Life with Parents • Control Affairs
What Laws Govern Transition? • Student - IDEA • Housing – Fair Housing Act, State Law • Legal Status – State Law • Medicaid – Medicaid Act/Katie Beckett/TEFRA/EPSDT/State Law • Employment – ADA • Insurance – State Law, Mental Health Parity Act
IDEA 300.43 • (a) Transition services means a coordinated set of activities for a child with a disability that-- – (1) Is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child's movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation; – (2) Is based on the individual child's needs, taking into account the child's strengths, preferences, and interests; and includes-- • (i) Instruction; • (ii) Related services; • (iii) Community experiences; • (iv) The development of employment and other post-school adult living objectives; and • (v) If appropriate, acquisition of daily living skills and provision of a functional vocational evaluation. • (b) Transition services for children with disabilities may be special education, if provided as specially designed instruction, or a related service, if required to assist a child with a disability to benefit from special education.
States with Autism Insurance Reform 2001 - Indiana 2009 - Colorado 2010 - Maine 2011 - Arkansas 2012 - Michigan 2009 - Nevada 2010 - Kentucky 2011 - West Virginia 2012 - Alaska 2007 - South Carolina 2009 - Connecticut 2010 - Kansas 2011 - Virginia 2012 - Delaware 2007 - Texas 2009 - Wisconsin 2010 - Iowa 2011 - Rhode Island 2013 - Minnesota 2008 - Arizona 2009 - Montana 2010 - Vermont 2011 - California 2013 - Oregon 2008 - Florida 2009 - New Jersey 2010 - Missouri 2011 - New York 2008 - Louisiana 2014 - Utah 2009 - New Mexico 2010 - New Hampshire 2008 - Pennsylvania 2014 - Nebraska 2010 - Massachusetts 2008 - Illinois 2014 - Maryland
Housing Needs for Adults with Autism http://vimeo.com/album/2176968/video/9806 8531
Educational Entitlements The Individuals with Disabilities Education Act (IDEA) mandates a public education for all children and makes schools responsible for providing the supports and services to make this happen.
Transition One of the goals of IDEA is for students to be prepared for employment and independent living.
Adult Services Where you live and work. There is no entitlement system. Some services are provided through Medicaid Home and Community-based Services (HCBS)
What we know about housing – Survey results
Housing and Residential Supports Survey The physical space Six out of ten families- believe a single family home would be most appropriate Preferred Home Location 64% thought a suburban environment would be most appropriate Eight in ten caregivers would like to live within an hour of the person with ASD
Survey results from Families and Caregivers
Survey results from Families and Caregivers
Survey results from people with ASD
Survey results from people with ASD
Survey results for people with ASD
Survey results – what have we learned?
. What are we doing? Angela Lello, Director of Housing and Residential Supports Dave Kearon, Sarah Andrews, Assistant Director Leslie Long, Director Coordinator Adult Services Adult Services Adults Services
Housing and Community Living: Understanding the Needs • A System not Purposefully Built – Action is needed – Complexity creates barriers – Leadership is critical – It’s time to listen
Specific strategy for Housing and Community Living State Family Federal Focus Housing and Community Living
Federal Objectives Further Relationships with CMS Establish Autism Speaks as a key congressional resource on Medicaid for individuals with ASD Work with Federal partners who have shared concerns
State Objectives Develop state-specific strategies Supplement and enhance existing advocacy Utilize key relationships with key policy makers to influence systems design
Family Focused Objectives Housing Housing Lindked in Online and Database Group course for Residential direct Tool Kit support providers
Autism Votes Medicaid Waiver outreach • Idaho • Indiana • Iowa • Georgia • Louisiana • South Carolina • Massachusetts
Family Focused Objectives Housing and Community Living Town Halls
Working Together
What Laws Govern Transition?
What Laws Govern Transition? • Student - IDEA • Housing – Fair Housing Act, State Law • Legal Status (Guardianship, Conservatorship) – State Law • Medicaid – Medicaid Act/Katie Beckett/TEFRA/EPSDT/State Law • Employment – ADA • Insurance – State Law, Mental Health Parity Act
Autism Speaks Government Autism Speaks Relations – Headquartered in New York Autism Speaks Government Relations - Headquartered in D.C. at 1990 K Street
Thank You!
One person can make a difference, and everyone should try. ~John F. Kennedy Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has. ~ Margaret Mead
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